PFAPA update

In the past, I've shared about Ivy's periodic fever syndrome. It has been quite a while since I've given an update.

During the spring we took Ivy to an infectious disease doctor, Dr Russ Osgathorpe. He is a wonderful pediatric specialist. When we went, Ivy had just finished an episode two days before. When he looked at her throat he saw the typical ulcers a child with PFAPA gets. He said that while we were talking about her, he was questioning if PFAPA was the right diagnosis. But after looking at her throat, he was 95% certain that that is what it is. He convinced us to try the prednisone treatment and said if she responded to the prednisone then he would be 100% confident in the diagnosis.

Three weeks later we got to give it a try. When she spikes to at least 101 degrees, we are to give her 1 tsp and then again 12 hours later. The several times we have given it to her, the fever breaks within the hour and doesn't return. Her fevers are less frequent now and with the prednisone, they never get above 101.

We are thrilled with our results.

During the Christmas break, she had an episode. We knew two days before the fever hit that she was starting. As you can see in the pictures below, her eyes start to get a sad looking and she drinks a ton of milk. This time, she enjoyed a root beer float.

Our next step is to get her tonsils and adenoids removed. There is an 80% chance of a cure- which seems like pretty good odds- especially now that we are comfortable with her diagnosis.

If you know of a child that has recurrent fevers that start to fit into a schedule of every 3-4 weeks, suggest they talk to their doctor about PFAPA. The doctor will run a few tests, to rule out anything else. The first test will be blood work measuring their sed rate during a fever and when they aren't fevering. They'll also run a urinalysis and culture to rule out a urinary tract infection. If their tonsils are affected, they'll run a strep test.